The voice of young patients and their parents matters. Patients know how it feels to go through the shocking news of a cancer diagnosis, a rough treatment journey (even when everything goes well or as planned) and to forego all the reassuring habits they once took for granted.

Organisations take better decisions on policies, regulations, trial design, treatment pathways or communication about the illness or treatments when they actively consult patients or involve them in their decision process. Luckily, there is a growing trend amongst key stakeholders to do so by taking patients’ experience into accounts and by relying on fact-based information about what patients really want or need.

By structurally empowering the voice of young patients and their parents, KickCancer’s “Patients Advocacy Committee” contributes to improve the quality of care and advocacy for paediatric cancer patients in Belgium and in Europe.

KickCancer’s Patients Advocacy Committee is conceived in three layers:

Informed patients:

As a patient, you might be interested in receiving specific information about our advocacy activities, research or projects (through our “patients-specific” newsletters) but not want to play an active role within the Committee – and we understand that.

If you want to receive the patients’ newsletter, click here.

Engaged patients

Our strategy and advocacy work are based on a representative pool of patients. Those patients are part of our Committee and willing to participate in focus groups (small discussion groups) we would organise on specific topics, surveys on broader questions we would investigate about or in our yearly conference.

Becoming an engaged patient would only require a limited commitment in terms of hours but it would really help KickCancer in improving its understanding of the Belgian landscape of paediatric cancers thanks to their input.

If you want to become an engaged patient and part of our Committee you can apply here.

Expert patients

Finally, some patients are interested in being more thoroughly involved.

Expert patients are patients who have been recruited for their skills, have completed a specific training and are willing to devote a regular amount of time to KickCancer’s advocacy activities.

This professional training, designed in collaboration with the PEC (Patient Expert Centre), allow those patients to elevate their patient’s experience to a “patient expert” level: they have learned how new treatments are developed (evidence-based research) and how patients can meaningfully express their point of view with researchers, pharmaceutical companies or authorities. This training enables them to play a central and level playing field role in discussions about paediatric cancers in regulatory discussions or in clinical working groups by representing the voice of the patients.

Expert patients have also been trained to provide new patients with peer-to-peer support. When you are dealing with cancer or the parent of a young patient dealing with cancer, you may want to discuss some aspects of your journey with a peer who understands what you are going through. You can find more information about peer-to-peer support here.

Our first certified expert patients graduated on December 2^nd, 2021. The next training will start in February and resume in October 2022. Other training sessions will be organised subsequently. If you want to apply to become an expert patient, please click here.

The Committee will organise a yearly conference to encourage better communication and understanding between all important players (regulators, researchers, authorities, social security payers, patients and industry).

Our second edition will take place on the 26th of May 2023 on the subject of "Improving care & research for Adolescents and Young Adults (AYA) with cancer".

If you would like one of our patients to participate in your project, survey or focus group please contact us via the form below.